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I have been at a loss for words. 2 beautiful souls gone way too soon. They pioneered metastatic breast cancer with grace and strength until the end. They both made a huge impact on my life and my own bc survivorship. I am grateful to have been able to hug and love on Kim in Vegas last month. Please say a little prayer for their families and friends. We are really feeling these colossal losses!! 💔 #metastaticbreastcancer #breastcancer #survivorship #weneedacure

4/27/2024, 12:40:26 AM

8 years ago today (April 26, 2016) our 4 year old baby girl started fighting for her life. For several days my “Mom gut” had known something was off, but I had no idea how close we truly were to losing her. When I took her to the doctor that day, her blood sugar was over 600 and she was in Diabetic Ketoacidosis. She was immediately diagnosed with Type 1 Diabetes, and spent most of the next week in the ICU at Arkansas Children’s Hospital. Although our lives changed drastically that day, thankfully, we were able to bring our baby home from a nightmare that some parents never get to wake up from. Together, we continue fighting for her life every single day. God is truly greater than the highs and lows 🙌🏻 G>^v #Type1Strong #WeNeedACure #JDRF

4/26/2024, 6:54:19 PM

Make a difference every month by joining our Monthly Donor family! 💛 With only 4% of the annual budget for the @nationalcancerinstitute going to childhood cancer research, every dollar counts. Your consistent support helps fund life-saving childhood cancer research year-round.🎗 Check out our pinned video on how to get started, or visit our website at the link in bio! #childhoodcancerawareness #childhoodcancer #theansleyfoundation #nonprofit #nonprofitorganization #neuroblastoma #pediatriccancer #weneedacure #childhoodcancerresearch #donations #cancerawareness #cancer #morethan4 #kidsgetcancertoo #ayacancer

4/26/2024, 6:04:23 PM

DO YOU RECEIVE OUR MONTHLY EMAIL [email protected] send a email to BE AWARE of BELAC news. #fundraising #fundraiser #childhoodcancer #virtualevent #cashapp #belacfoundation #childhoodcancerawareness #MyWordMyBond #Integrity #SteppingIntoOurNextLevel #BELACStore #Awareness #nurses #doctors #letsjustgetitdone #fromtradegytotriumph #November #donate #AreYouAware #WeAreStrongerTogether #WeNeedACure #ChangingTheLivesOfOthersOneSmileatATime #hislifehislegacymypassion #cashapp #healthyrelationships #belacgivingtuesday #givingtuesday #awarenesswednesday #sharingsaturdays

4/25/2024, 8:55:54 PM

Kennedy is having to relearn how to stand and walk by herself since she had double hip and double knee surgery in November. This picture was taken in March and we are so thankful for the progress she is making. Kennedy appears taller and we are excited to see how the eight-plate surgery straightens her knees. ⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/25/2024, 6:01:24 PM

SE ARRIVASSE IL GIORNO DELLA CURA Mi capita di raccontare aneddoti o ricordare momenti della mia vita avvenuti prima di dieci anni fa - ho avuto l’esordio a febbraio 2014 - e immediatamente di pensare “non avevo ancora il diabete” e fare fatica a crederci. La mia infanzia, l’adolescenza, il liceo, l’università le ho vissute tutte da bambina e ragazza libera. Rendermene conto mi porta a provare emozioni molto diverse: da una parte sono sollevata di aver vissuto tutti quegli anni, 25, senza pensieri di calcoli, numeri e aghi. Dall’altra mi fa molto male - e mi viene un po’ da piangere anche ora dicendolo- essere consapevole di essere dipendente da un farmaco, per sempre. Per sempre o forse solo per un altro po’? Dipende se la cura arriverà prima che sarò troppo vecchia per godermela. Riabituarmi alla libertà di mangiare con il cervello sconnesso o di andare a fare una corsa senza programmare niente sarebbe assurdo ormai. Penso che continuerei a chiedermi per mesi quanto ho di glicemia o a infilare le caramelle alla frutta in tutte le tasche. ma se concedo alla mia testa di illudersi per qualche momento e provare a respirare quella libertà lì, immagino una felicità che non ho mai provato prima e non proverò più, imparagonabile a qualsiasi altro momento bello della vita. Una felicità più grande di tutte le felicità. E immagino una festa dove si mangia, si balla e si beve fino all’alba senza chiederci più se possiamo continuare a mangiare, ballare e bere. Perchè quel giorno, la glicemia non deciderà più per noi. Mangerei, ballerei, festeggerei, camminerei, viaggerei, lavorerei, improvviserei SENZA PENSARE PIÙ ai numeri. L’ultimo episodio della terza stagione dei Funamboli si intitola “Verrà il giorno”. Come ospiti ci sono @francescauliviofficial e Manuela Battaglia, che in modo diverso stanno dedicando la propria vita alla ricerca di una cura. E poi c’è una dedica che difficilmente dimenticherò. E le vostre voci che immaginano quel giorno. Come sempre, preparate i fazzoletti. @__a__me__mi__ @storielibere.fm @medtronicita . . #diabetetipo1 #diabeteitalia #ricercascientifica #podcastitalia #ifunamboli #weneedacure #senzapensieri #senzazuccheriaggiunti

4/25/2024, 10:15:24 AM

We often get asked why Lincoln doesn't have as many symptoms as Kennedy. They both have MPS1, but because of newborn screening, Lincoln was able to begin treatment as an infant, whereas Kennedy didn't begin treatment until 9 months old. Even months make a difference. This is why we are strong advocates for MPS1 being on newborn screenings in every state!⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/24/2024, 6:01:31 PM

Our namesake, miss Vivian Lee, wants all the other kids with CF out there to know that "you can do hard things!" Vivian has had a very up and down year this past year with her CF. From hospitalization to extra treatments, changing medications and missed social activities, she is finally feeling more herself with improved lung function. Through it all, she has kept her sweet and happy spirit up and never let the complications of CF get her down.

4/24/2024, 4:45:30 AM

In these last few months we’ve had the opportunity to meet 4 more Sanfilippo families 💜 We are always so grateful for the community and meeting these kids as beautiful as Victoria 💜 #avoiceforvictoria #thisisourjourney #strongertogether #weneedacure #sanfilippowarriors #sanfilippocommunity #curesanfilippo @jolenebringsjoy @everydayeli_lifewithsanfilippo @roamingandrare

4/24/2024, 4:29:09 AM

Kennedy LOVES swimming. It has been a much-needed relief during her recovery from double hip and double knee surgery. ⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/23/2024, 6:01:28 PM

This is our mood because our Run for A-Rare-Ness and Wiffle for a cure is less than two weeks away!! Be sure to visit the link in our bio to register!⁠ ⁠ Kennedy loves her shirt from @lake865tn⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/22/2024, 6:01:43 PM

✨THANK YOU✨ to everyone who came out and supported our Spring Into Action Against Childhood Cancer event at @champagnecohair this past Saturday!! We had a full house, and together we raised $4,100 for childhood cancer research!🎗 Relive this event with us as we share highlights from this unforgettable evening! We wanted to congratulate all our silent auction winners, and everyone that attended to help make a difference! Special shout out to @chan.champagne and @leah_a_webster for hosting this event for us! We are so appreciative of the support we get from the community surrounding us 💛 #childhoodcancerawareness #childhoodcancer #theansleyfoundation #nonprofit #nonprofitorganization #neuroblastoma #pediatriccancer #weneedacure #nonprofitfundraising #nonprofitlife #childhoodcancerresearch #charityevent #donations #cancerawareness #gogold

4/22/2024, 5:13:51 PM

Meet Charlotte! 💜 She's a 2-year-old warrior who faced her first seizure at just 6 months old. Despite her challenges, Charlotte's love for books and music shines bright. 📚🎶 Her family is in awe of her remarkable empathy; she's always there with hugs and kisses to cheer up anyone feeling down. 💕 Let's rally together to find a cure for Charlotte and other children living with PCDH19. Every donation brings us closer to a brighter future for these brave fighters. 🌟 Visit www.pcdh19info.org to learn more and show your support. #PCDH19Alliance #PCDH19Epilepsy #PCDH19 #Epilepsy #Seizures #ClusteringEpilepsy #PCDH19Awareness #EpilepsyAwareness #Neuroscience #WeNeedACure #MeetCharlotte Together, we can make a difference! 💪✨

4/22/2024, 3:49:42 PM

Meet Nora, 10 years old from Oregon! Nora loves school, her friends, her dog Lady, roller skating, jellycats, slime, and macaroons! She also loves to dance! She’s on a local dance team and competes in jazz and hip hop style dance. Thanks to The Vivian Lee Foundation for helping support Nora by graciously giving her a grant that helps pay for her dance team costs. Nora was diagnosed with cystic fibrosis at birth. While her respiratory system has been relatively healthy, her digestive system has been most affected. Weight gain has always been a struggle for Nora, even despite having a feeding tube for extra calories. She displays bravery every day as she keeps up with her medications, breathing treatments, tube feedings, blood sugar monitoring, and doctors appointments. And also just being TEN! Nora would like to say thank you to the Vivian Lee Foundation and “never give up” to her fellow CF friends.

4/22/2024, 12:03:32 AM

Thank you @belmontvillageseniorliving for the invitation to attend the @alzassociation Aware Luncheon. Dr. Huda Zoghigave is a glimmer of hope on the research her group is doing 🙏 #endalzheimers #weneedacure

4/20/2024, 10:55:32 PM

Today is the Seize the Cure 4 Epilepsy Event! I am so honored to be here today and to be able to meet others like me, struggling with epilepsy! 💜 I am so glad I got to share my artwork, which has been inspired by my journey and my own life. Shout out to everyone who made this event and shout out to @tjvida for making this event possible for us all! We need more awareness, we need support, we need education, we need MORE!!! 💜 #SeizeTheCure4Epilepsy #epilepsyawareness #epilepsy #epilepsywarrior #epilepsysupport #epilepsyfighter #epilepsystrong #epilepsyawareness💜 #seizethecureforepilepsy #epilepsyevent #epilepsyevents #weneedacure

4/20/2024, 9:24:41 PM

Please think about registering for WALK MS and walk with TEAM JENIFER this year on Sunday, May 5th at Cheshire High School~ I really wish there wasn’t a walk every year, but we really need to raise funds and awareness for people with Multiple Sclerosis!! I was diagnosed 26 years ago when I was pregnant with my daughter Cara. During these 26 years, there have been many highs and many lows along the way, but I have learned that I am strong, brave and resilient!🧡 Multiple sclerosis has taken my ability to walk with ease, but I am determined as a result 🧡 MS is tricky like that…It takes and it takes~ when it finally gets your attention, you really realize who you are at the core!💪🏼 Link in bio #thisisMS #walkMS2024 #teamjenifer #walkamileforme #weneedacure

4/20/2024, 5:05:34 PM

I’ve been slow to update, I’ve been in Florida for a work conference, and life has just been busy! Cannon is doing great! He enjoyed watching the eclipse while laying on the trampoline, loves his new ride-on car Mommy got him, and always enjoys soaking up time with his sweet friends who live right behind us. Chloe, better known as “Coco” and her big brother Jaxson, love Cannon just as he is. I’m so thankful Cannon has such sweet friends who view Cannon, simply as Cannon. Cannon continues to add words to his vocabulary, and also articulates words so much more clearly. He’s non stop energy and always on the go - it’s tiring trying to keep up with him, but I would not have it any other way! I missed this boy so much while I was in Orlando and coming home to his hugs, kisses and snuggles was the absolute best feeling. Annnd while mommy was away, Cannon had a special delivery, but more to come on that later 💜 During my work conference, we talked about The Joy Project - and what brings YOU joy. Cannon, without a doubt, is the source of my joy, and the joy of so many others. He lives life unapologetically, and finds a reason to be joyful each and every day. If we all viewed the world as an endless source of joy, the way Cannon does, we would live in a much happier place. Find what makes you joyful, and surround yourself with that source. Life is entirely too short to not spend each moment living unapologetically, finding the good in the world, and choosing happiness. I’m so grateful Cannon has taught me the value of a moment, and the importance of never allowing anything, or anyone, to steal your joy. “Cause I don’t want to let you go, and I don’t want to lose you slowly…” #joyforward #thejoyproject #happy #advocatelikeamother #curesanfilippo #raredisease #weneedacure #teamcannoncan

4/20/2024, 4:21:35 AM

We are 1 day away from our annual Spring Into Action Against Childhood Cancer event at Champagne & Co. Hair Salon! Here's another sneak peek of more of the auction items you'll see tomorrow from these sponsors! Jack Daniel's Box Schlampp Pools and Spas @schlampppools Burn Boot Camp @burnbootcampacworthga Strum and the Daniel's Family Cody Evans Holly Zarka, Author Karen Diffee Smart Septic Pros smartsepticpros Just Me Kickboxing @justmekickboxing Elite Air @eliteairllc 💛 We couldn't do it without all our amazing sponsors and auction items donated: @thebodyglow @cleaneatzacworthga @lovedbyloveless @shoptherusticmarket @jdsbarbque @burnbootcamp @scoopsacworthga @schlamppturf @crossrailtack @underground_glow @bubolomedical @brow_xpressions_beauty_spa @pizzashackco @pumpkinvinegardensflowersshoppe @canvasbydryps, AG's Steakhouse, Brooke Leigh Tees See you tomorrow! 📍Champagne & Co. Hair Salon 3969 S Main Street, Acworth, GA #childhoodcancerawareness #childhoodcancer #theansleyfoundation #nonprofit #nonprofitorganization #neuroblastoma #pediatriccancer #weneedacure #childhoodcancerresearch #donations #cancerawareness #donations #sponsors

4/19/2024, 10:42:52 PM

🌟 Meet the faces behind the magic! ✨ We're excited to share an inside look at the incredible individuals who make our PCDH19 Alliance team shine. Meet Karin Wells-Kilpatrick, Vice-President & Co-Founder of the PCDH19 Alliance! Meet Karin! 👋 💜Karin’s daughter, Kira, was diagnosed with PCDH19 at age 9. 💜Outside of the Alliance, Karin is an electrical engineer in microelectronics fabrication. 💜Within the Alliance she serves as our scientific officer. She utilizes her science & engineering background to keep track of the PCDH19 & relevant research, answer family questions about genetics and neuroscience, and reach out to scientists regarding PCDH19 and research. 💜Her favorite part of her involvement in the Alliance has been watching the increase of scientific research & awareness lead to improved standard of care, as well as earlier diagnoses for children and more diagnoses for boys. Just For Fun Questions: Q: If you could go see anyone in concert, who would you want to see? A: "Not much of a concert goer, but I would go see my husband's band play a gig." Q: If you were a pizza topping what would you be and why? A: "I can't eat standard pizza (no wheat or cheese), but maybe pineapple, since it is a less common topping, an acquired taste, and sweet." #MeetTheTeam #BehindTheScenes #pcdh19alliance #pcdh19epilepsy #pcdh19 #epilepsy #seizures #clusteringepilepsy #pcdh19awareness #epilepsyawareness #neuroscience #weneedacure

4/19/2024, 7:38:02 PM

Who's excited for spring sessions with @sarahelizabeth_photo on April 28th!? She does SUCH a good job on our family portraits and we are so excited for this collab. ⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/19/2024, 6:02:01 PM

We are so thankful that Kennedy has been able to get the therapy she needs as she recovers from her double hip and double knee surgery.⁠ This picture was taken on the day she was receiving her AFO braces for her legs. ⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/18/2024, 6:01:25 PM

Did you know that you can shop our merch at the link in our bio and support our mission while also spreading awareness??? Visit our donation-based shopping platform on our website for more info!⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/17/2024, 6:01:45 PM

From yesterday's project meeting planning year 2 💙 Love this group of souls! @ytanforunga #huntingtondisease #huntington #genepositive #huntingtonsdiseaseawareness #huntingtonsdiseasesucks #talkaboutit #speakout #mystory #brain #genes #weneedacure #sharingiscaring #huntingtonssjukdom #raredisease #riksförbundethuntingtonssjukdom #RHS #ytanforunga #project #nka #alzheimersfonden

4/17/2024, 12:23:33 PM

You know Lupus and my other autoimmune diseases are so crazy and frustrating, Like how I can go from looking like this rushing to the ER at 4am this morning spending hours there in agony, because all my joints and muscles were in screaming pain getting IV steroids and a bunch of other meds... to coming home taking a shower and feeling better.. 2nd picture. Temporarily better but better than this morning. We can't give up one day the good days will outnumber the bad one. That's my prayer for all of us. 💜💜💜💜💜 #onedayatatime #LupusSucks #weneedacure

4/17/2024, 12:22:43 AM

Here's the first look at some of the auction items for our annual Spring Into Action Against Childhood Cancer event at Champagne & Co. Hair Salon (@champagnecohair)THIS Saturday, April 20th! 💛 We couldn't do it without our amazing sponsors (more to come): Clean Eatz @cleaneatzacworthga Loved By Loveless @lovedbyloveless Rustic Market @shoptherusticmarket JD's BBQ @jdsbarbque The Body Glow @thebodyglow AG's Steakhouse, Acworth, Ga Scoops @scoopsacworthga Schlampp Turf Management @schlamppturf Crossrail Apparel & Tack @crossrailtack Drypz @drypzatl Underground Glow/Stephanie Stevens @underground_glow Bubolo Medical @bubolomedical Champagne & Co. Hair Salon @chan.champagne Brow Expressions & Beauty Spa/Kristi Graham @brow_xpressions_beauty_spa Pizza Shack @pizzashackco Pumpkinvine Gardens Flower Shoppe @pumpkinvinegardensflowershoppe Brooke Leigh's Tee Shirt Co @brookeleighstees Double tap if you see something you like! #theansleyfoundation #acworth #nonprofit #childhoodcancerawareness #charityevent #neuroblastoma #cancer #childhoodcancer #weneedacure #nonprofitlife

4/16/2024, 7:09:48 PM

Our Run for A-Rare-Ness and Wiffle for a Cure is only a few weeks away and we can't wait to see you there! This event is fun for the whole family. Visit the link in our bio to sign up!⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/16/2024, 6:01:23 PM

We are making the dream a reality. Last night, we assembled 5 Jazmine Piggie Baskets that are being delivered next Monday to the children’s hospital. In each basket there is a taggie piggie, $25 gift card to Jason’s Deli, a carload pass for the drive in movies , a small blanket, soft baby book , Jazmines Journey lanyard and sticker. #jazminesjourney #nonprofit #aznonprofit #thegreatergood #childhoodcancer #childhoodcancerwarrior #childhoodcancerawareness #childhoodcancerwarriors #weneedacure #instagood #instalike #instadaily #instamood #following #followus #donation #donationbased

4/16/2024, 4:35:43 PM

@ytanforunga is a fantastic project that I am involved in for young relatives of someone with neurodegenerative diseases. I hope everyone can go follow our instagram account, tiktok, and Facebook. Check out our website and listen to podcast episodes or watch movies we've recorded 💙 #huntingtondisease #huntington #genepositive #huntingtonsdiseaseawareness #huntingtonsdiseasesucks #talkaboutit #speakout #mystory #brain #genes #weneedacure #sharingiscaring #huntingtonssjukdom #raredisease #riksförbundethuntingtonssjukdom #RHS #ytanforunga #project #nka #alzhimersfonden

4/16/2024, 2:07:06 PM

The most consistent feature of PCDH19 Epilepsy is its relentless nature. Seizures come in clusters, often defying medication and control. 💔 We stand together in hope in the fight for more answers and a cure that we so desperately need. 🧠💫 Every day, we're committed to raising awareness and advancing research. Together, we can make a difference. 🌟 Let's amplify our voices, advocate for change, and support each other on this journey. 💪💜 #PCDH19Education #PCDH19Alliance #PCDH19Epilepsy #PCDH19 #Epilepsy #Seizures #ClusteringEpilepsy #PCDH19Awareness #EpilepsyAwareness #Neuroscience #WeNeedACure Together, we're stronger. Together, we'll find a cure. ✨

4/15/2024, 6:56:11 PM

A look back to a blog from 2019: April 15th, is a date I'll never forget. Cancer was both a blessing and a curse to our family. It created a bond for the 4 of us that will forever be unbroken. It brought incredibly loving and special people into our lives to walk with us on this journey while Ansley was ill –and now with The Ansley Foundation. It forced us to spend time as a family that probably would have been spent doing other things separately if not for the thousands of hospital hours, commuting hours, Netflix hours, discussion hours and prayer hours. It has shaped the future of her sister who now works on the very PICU floor that Ansley spent her last months going to and from. Ashtyn’s career choice will make a difference in another child’s life like so many made in Ansleys. Most importantly, it led Ansley to deepen her walk with Christ and that led us to begin to strengthen our relationship with Him, which ultimately helped to prepare us for saying goodbye to part of our world. Being baptized at her feet in our home on April 15th, 2018 is a gift that I could never imagine and to have my Dad then follow me and get baptized as well was something I never thought I’d see. Seeing her mom and Grandpa baptized brought her to tears and was something I know she had prayed for and I had prayed about for some time. I’m thrilled God granted us the time and opportunity to do it, as He called her home just 37 days later. #theansleyfoundation #blessed #faith #baptism #cancer #childhoodcancerawareness #childhoodcancer #nonprofit #cancerawareness #nonprofitorganization #neuroblastoma #gogold #pediatriccancer #weneedacure #donations #childhoodcancerresearch

4/15/2024, 6:04:24 PM

April 28th!! Mark your calendars! @sarahelizabeth_photo⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/15/2024, 6:02:03 PM

https://www.facebook.com/share/v/gQxDKUba5vVdVZzu/? https://www.facebook.com/share/v/gQxDKUba5vVdVZzu/? Thank you to everyone who joined us for Zumba for Rocco! Your presence and generosity made a significant impact. A special shoutout to those who donated gift certificates, gift baskets, and purchased raffle tickets - your support means the world to us. Together, we are making a difference and showing Rocco that he is surrounded by a community full of love and compassion. Thank you for your kindness and generosity! Thank you Astoria, Long Island , Staten Island & New Jersey for your support!!! I did this event Zumba for Rocco with all my heart, this was my first fundraiser that I did for my sweet friend Rocco. Your support has truly touched us. Rocco, keep smiling - you will kick cancer's butt! #zumbaforrocco #ROCCOSTRONG #noonefightsalone #weneedacure

4/14/2024, 6:40:10 PM

Embracing my journey with grace and courage, living with an invisible illness. Together, we are warriors, fighting battles unseen, but felt deeply. Finding strength in our spoonie family, pushing for awareness and a cure. Remember, not all disabilities are visible. 🥄💪❤️ Keep fighting, stay strong. #spoonielife #fnd #socialanxiety #livingwithinvisibleillness #invisibleillnessawareness #invisibledisability #chronicillness #spoonie #chronicillnesswarrior #autoimmunedisease #fibromyalgiawarrior #chronicillnessawareness #chronicpainwarrior #spooniestrong #disability #fatigue #notalldisabilitiesarevisible #chronicpainawareness #spooniefamily #weneedacure

4/13/2024, 9:05:19 PM

MRI’s done ✅ till next year’s review. I love getting goodies to go 🤣 thank you @stonybrookneuro. I’ll keep everyone posted on results when I hear back from my MS specialist. #godfirst #praying #godfearingwoman #faith #hope #love #family #thisisms #livingwithmultiplesclerosis #multiplesclerosisawareness #mri #cantstopwontstop #mssucks🎗 #fums #weneedacure #mysymtoms #brainlesions #cervicalspine #thoracicspine #invisibledisabilities #mssupport #madestrong #wifeandmom

4/12/2024, 7:49:54 PM

Spring break was one of Ansley's favorite time of the year—a week filled with sunshine, laughter, and carefree moments by the beach. It was her escape from the realities of cancer, a time to soak up the joy of simply being. As we welcome the arrival of spring, we're reminded of Ansley's spirit and her love for these memories. For those who are going (or already have), wishing everyone a happy spring break filled with unforgettable memories and moments of pure bliss. Double tap if you want to see more of Ansley's favorite memories! #childhoodcancerawareness #childhoodcancer #theansleyfoundation #nonprofit #cancerawareness #nonprofitorganization #neuroblastoma #gogold #pediatriccancer #weneedacure #donations #childhoodcancerresearch #springbreak #30A #childrenshealthcareofatlanta

4/12/2024, 6:31:10 PM

Tomorrow is Ryan's Birthday!! All of our birthdays are close together in the spring and summer months and we always run a birthday fundraiser to celebrate! Keep your eyes open for the start of that fundraiser!⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/12/2024, 6:01:24 PM

This mighty warrior 💛 update: Her current labs are great. There is still no sign of active disease. She can drop her Methotrexate dose *slightly, but instead of a full wean from this in the near future she is going to remain on this dosage… for how long, I don’t know. Caroline has a myositis specific autoantibody that indicates a chronic, life-long course. We’ve known this since early on, when her doctor first requested the myositis lab panel to be done out of a special lab in Oklahoma. But this lab hasn’t been discussed in quite awhile…at today’s appointment her doctor referred back to it, stating he’s concerned that if we fully pull her off meds, she is more likely to flare given this autoantibody. Basically, we need to keep her immune system suppressed. So, the sh*tty yellow methotrexate will stay in play. And we will focus on the fact she is in medicated remission thanks to these medications and ultimately because of her brilliant rheumatologist. (See how I’m practicing that attitude of gratitude?😬🙃) #myositis #juveniledermatomyositis #curejm #weneedacure #autoantibody

4/11/2024, 11:29:51 PM

This morning was rough. Malachi didn’t sleep well last night and then his continuous glucose monitor fell off around 7am. With a two hour start up time I wanted to try and get a new one on around the start of school. Malachi was so tired and of course super grumpy as I would have been too. It took me forever to try and get the new site on as he kept moving his arm away from me. Finally got it on and blood started seeping through. It’s always so disturbing when I see this and I remember the first time it happened I freaked out. Thank God there are T1D fb groups and I was told that sometimes it just happens and that oftentimes “bleeders are readers” in that when there’s lots of blood like this the sensor reads blood sugar more accurately. Just another Thursday morning… #Type1Diabetes #T1d #t1dwarrior #weneedacure #sensor #dexcom #t1dmom #tiredmom

4/11/2024, 6:35:53 PM

Ugh, just dying 💔 . . . . . . . . . . . . . . . . . #illness #cramps #chronic #pain #endoproblems #chronicillness #endostrong #period #invisibleillness #chronicpain #endo #invisible #dying #invisible #endoflare #awareness #cure #flare #weneedacure #endopain #hurt #bloody #headache #everythinghurts #imdying #hurts #iwannastabmyuterus #endometriosis #freakingcramps

4/11/2024, 1:45:19 AM

When you have children with a disability, there is no time to process or feel your own emotions. In fact, the success of each day sometimes rests on our ability to push our emotions to the side and be available and present for our children. We can't be sad every time we feel sad. We can't rest every time we feel tired. This is why so many disability caregivers are burnt out. It's not healthy, but it's necessary. If it comes down to our mental health or our children's physical health.... We will choose our children every single time. Maybe one day we will process through our trauma, but until then, we keep fighting because it's truly who we are and what we do.⁠ ⁠ Inspo from @krrysstaac ⁠ ⁠ Kennedy Loves her shirt from @lake865tn⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/10/2024, 6:01:33 PM

"A strong woman didn't become strong overnight. She became strong by overcoming all the things that were meant to destroy her."⁠ ⁠ @museknox⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/9/2024, 6:01:39 PM

It’s time for a C U R E! Who agrees? #childhoodcancer #weneedacure

4/9/2024, 6:05:24 AM

Do you want to know what is standing between this kid and a future? A profit. A cure for Sanfilippo Syndrome is absolutely possible. The problem? It’s not profitable for drug companies. If you’re sad, Cannon will wipe away your tears. If you’re sick, Cannon will rub your back and give you the best snuggles. If you need a laugh, Cannon will deliver! He is quite the comedian. Cannon is the good this world needs. Cannon brings so much joy to everyone he meets. This boy is my reason for all that I do. Even on my darkest days all I have to do is look at this face and know that this battle is one worth fighting. I hope you never know the pain of fighting to have your voice heard. I hope you never know the fear of saying goodbye to your child. I hope you never have to go to battle to simply give your child a fighting chance. But if you should ever find yourself in one of these situations, just know I will be in your corner. These lives are lives worth saving. We need to change the narrative. Diseases such as Sanfilippo Syndrome should not be death sentences. Join our fight. Share Cannon’s story. Help me save my bestie, I simply cannot imagine doing live without him. Save the unicorns. 💜 #teamcannoncan #hope #savetheunicorns #thereisalwayshope #love #sanfilippo #weneedacure #raredisease #advocatelikeamother #shareourstory

4/9/2024, 4:58:07 AM

Do you want to know what is standing between this kid and a future? A profit. A cure for Sanfilippo Syndrome is absolutely possible. The problem? It’s not profitable for drug companies. If you’re sad, Cannon will wipe away your tears. If you’re sick, Cannon will rub your back and give you the best snuggles. If you need a laugh, Cannon will deliver! He is quite the comedian. Cannon is the good this world needs. Cannon brings so much joy to everyone he meets. This boy is my reason for all that I do. Even on my darkest days all I have to do is look at this face and know that this battle is one worth fighting. I hope you never know the pain of fighting to have your voice heard. I hope you never know the fear of saying goodbye to your child. I hope you never have to go to battle to simply give your child a fighting chance. But if you should ever find yourself in one of these situations, just know I will be in your corner. These lives are lives worth saving. We need to change the narrative. Diseases such as Sanfilippo Syndrome should not be death sentences. Join our fight. Share Cannon’s story. Help me save my bestie, I simply cannot imagine doing live without him. Save the unicorns. 💜 #teamcannoncan #hope #savetheunicorns #thereisalwayshope #love #sanfilippo #weneedacure #raredisease #advocatelikeamother #shareourstory

4/9/2024, 4:56:41 AM

What are you doing April 20th 4-7PM? You don't want to miss our annual Spring Into Action Against Childhood Cancer Event at Champagne & Co. Hair Salon (@champagnecohair)! 🎉 What to Expect: - Indulgent treats and refreshments - Exciting silent auction items - The Ansley Foundation merch 💛 How You Can Contribute: - Attend the event and indulge in an evening with ladies - Spread the word and bring friends - Make a donation through our website if you can't make it - Donate an item or service for us to include in the silent auctions 🎗 Purpose Behind the Glam: All proceeds from this spectacular event will go directly towards funding a cure and assisting families affected by childhood cancer. 📍Champagne & Co. Hair Salon 3969 S Main Street, Acworth, GA Save the date & let us know if you can make it, see you there! #childhoodcancerawareness #childhoodcancer #theansleyfoundation #nonprofit #nonprofitorganization #neuroblastoma #pediatriccancer #weneedacure #childhoodcancerresearch #donations #cancerawareness #charityevent #atlantanonprofit #atlantacharity

4/9/2024, 12:09:30 AM

Have you registered yet?? We already have 10 MPS families joining us and we would love to have YOU! You can find more info and sign up at the link in our bio.⁠ ⁠ MPS1 families, reach out to us at [email protected] if you would like to come. We want to help pay for your travel and a trip to Dollywood with the other MPS families on May 5th!⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/8/2024, 6:01:32 PM

💜✨A heartfelt THANK YOU to all the incredible families who participated in our Spring Fundraiser! 🌟 Your support has been truly amazing and inspiring. We are happy to announce that our 'Spring Into Action' Fundraiser has raised a total amount of $9,596! 💰 This generosity will fuel much-needed research to enhance the lives of those affected by PCDH19. 🧠💕 To every donor, sharer, and fundraiser, your dedication is changing lives and shaping the future. 🙏 Let's continue to spread awareness and support for PCDH19 epilepsy! 💜✨ #PCDH19Alliance #PCDH19Epilepsy #PCDH19 #Epilepsy #Seizures #ClusteringEpilepsy #PCDH19Awareness #EpilepsyAwareness #Neuroscience #WeNeedACure Together, we are making a difference! 🌈💪

4/8/2024, 12:50:25 PM

Donate to win @taylorswift tickets! This year, @marylinhr and I are raffling off a pair of VIP Era's Tour tickets (Vancouver BC) in support of the 2024 GearUp4CF fundraiser I'll be riding in. (Details on the raffle below) . Your donation will help our GearUp4CF group reach this year's goal of $170,000 for CFCanada to fund patient care, research, and advocacy in the fight against Cystic Fibrosis. We know first hand what it's like to live with this genetic disease, which primarily affects the lungs and digestive system and has major impacts on both quality of life and life expectancy, and want to make CF stand for Cure Found! . Besides entry into the Swift tickets raffle, all donations are tax deductible in Canada, just follow the link below to donate or go to GearUp4CF.com and find my personal fundraising page "Darrell's Fundraising Era". . https://click.pstmrk.it/3s/cysticfibrosis.crowdchange.ca%2F53996%2Fpage%2F189400/z9pU/wXS1AQ/AQ/8ca1f6e3-634c-4c67-a389-149170fa07d7/1/InS6eHqoKy . RAFFLE details You will receive one entry into the raffle per $100 you donate via the link above (also available in my bio), provided you also; . 1. Like this post. 2. Tag some friends or share this post in your Instagram stories. . When you donate, please use your Instagram handle as your donor name to help me keep track of draw entries. Tickets will be transferred to you through the Ticketmaster app after the draw, which will happen on Friday, June 8th. Good luck and thank you so much for your support!! . #gearupforcf #cysticfibrosis #weneedacure #curecf #fundraiser #cycling #gearup4cf #cfcanada #taylorswift #raffle #win #erastour #viptickets #swiftie #rogersarena #vancouverbc

4/7/2024, 11:13:26 PM

Today @meganjoyb is officially a registered nurse!! 💉 👩🏻‍⚕️I couldn’t be more happy and proud of this wonderful woman. Megan and I met via Instagram. She is a young mom living life with metastatic breast cancer and was a nursing student. We started chatting and found out we lived in the towns right next to each other (10 min away)! Anyone who has been through nursing school and taken the NCLEX understands the dedication and sacrifice it takes to become an RN. Not only did she succeed but she did it while managing her MBC. Living with incurable cancer has its own life altering struggles. Megan is going to be such an amazing nurse in whatever practice she chooses. I am proud to call her my friend. She inspires me to live life with hope and dare to dream despite it all. 🩷💚💙 #registerednurse #NCLEX #stage4needsmore #breastcancer #weneedacure #youngpeoplewithterminalcancer

4/7/2024, 7:17:11 PM

On World Health Day, we are raising awareness about childhood cancer, advocating for better health resources, and fostering a world where every little one can thrive. Our hope is that one day, we will live in a world free from childhood cancer—where every child can grow, play, and dream without the shadows of illness. Comment a 🌎 if you share that same hope. Together, we can make a lasting impact. #childhoodcancerawareness #childhoodcancer #theansleyfoundation #nonprofit #nonprofitorganization #neuroblastoma #pediatriccancer #weneedacure #childhoodcancerresearch #choa #donations #cancerawareness #gogold #worldhealthday #childhoodmemories #cancerfree

4/7/2024, 7:03:26 PM

This kid makes me so proud everyday 💗 Mom has been diagnosed with a form of cancer and has already had two major surgeries and now two different types of treatment will be starting soon 🩶 Mom and Dad will be away from home for six weeks for the first treatment and being able to rest easily knowing he’s got control of his diabetes and celiac disease helps take a little bit of burden off our heavy load of worries. At this age we all know they just want to be teens, having fun with friends, working, socializing, going to the gym etc. but I know he also has to worry about his T1D but he’s got this. He can do all the fun things and take care of it as well and it just makes me so proud. #wecandohardthings 💙💚 And while he’s living normal life, he’s also busy at CAP and earning promotions!!! He’s got a lot on his plate, and he’s a busy kid, and he works hard 🇺🇸 #cap #civilairpatrol #civilairpatrolcadet ....... #t1dlookslikeme #t1dwarrior #t1dmom #diabetesawareness #invisibleillness #typeonewarrior #t1warrior #type1diabetes #typeone #typenone #weneedacure #t1d #typeonediabetes #type1mom #celiacdisease #celiac #celiact1d #t1dceliac #t1dceliacwarrior #celiacwarrior #t1dsucks #celiacsucks #omnipod5 #dexcomg6 #diabadass #dexcomwarrior

4/7/2024, 5:06:14 PM

Some throw backs of my sweet baby 💜 Sometimes it’s easy to feel defeated, but I look at this face and I know he’s counting on me to keep advocating and to keep fighting… and I will not let him down. Strength is what we gain from the madness we survive 💜 #teamcannoncan #thereisalwayshope #advocatelikeamother #curesanfilippo #sanfilippo #amotherslove #weneedacure

4/6/2024, 3:06:48 AM

Learning to come to terms and embrace my new normal has been a difficult challenge for me. #godisgood #godfirst #wife #momlife #thisisme #thisisms #mri #weneedacure #stonybrookneurology #kesimpta #fighting #livingwithmultiplesclerosis #multiplesclerosis #multiplesclerosisawareness #embrasingtheseasons #itsoktonotbeok #selfcare #me #fums #msstrong #mssucksbutimstillfabulous #msconnections #madestrong #kesimpta #cantstopwontstop

4/6/2024, 2:02:53 AM

This is our Sarcoidosis Sister Carolyn Whitacre and she is a Beautiful Face of Sarcoidosis!💜 Carolyn shared: “I’m a 15 year Sarcoidosis warrior diagnosed in 2010 everyday is a challenge never know what symptoms I will have daily we need a cure I will not give up even when I feel like it #Sarcoidosisawareness2024 #Sarcoidosiswarrior #Weneedacure” #Sarcoidosis #raredisease #patientadvocate #sarcoidosisadvocate #beautifulfacesofsarcoidosis #sarcoidosisawarenessmonth

4/5/2024, 10:20:23 PM

During National Young Adult Cancer Awareness Week, we reflect on the unique journey of those, like Ansley, whose childhood cancer transcended into young adulthood. While many twenty-somethings navigate typical concerns, our warriors face a different reality. Instead of celebrating milestones, opportunities that many may take for granted, these years are marked by the resilience shown in hospital corridors. Ansley will be forever 21. Like and follow to stay informed on how we are making a difference for those facing childhood cancer at any age🎗 #childhoodcancerawareness #childhoodcancer #theansleyfoundation #nonprofit #nonprofits #nonprofitorganization #neuroblastoma #atlanta #pediatriccancer #weneedacure #childloss #childhoodcancerresearch #choa #donations #cancerawareness #nonprofitlife #cancer #nationalyoungadultcancerawarenessweek #ayacancer #ayacancerawareness

4/5/2024, 7:05:38 PM

Reese would love a Fathead of her face! Donate between now and Saturday and she could have her very own on walk day! 😁. Donation link in bio! #teamreese #weneedacure #fathead #jdrfwalk

4/5/2024, 3:42:59 AM

In March Kennedy made some big moves toward recovery from her double hip and double knee surgery. She took her first steps without ANY assistance. 🙌⁠ ⁠ ⁠ #curehurler2025 #fightmps1 #raiseawareness #prayersneeded #raredisease #rarediseasewarrior #fightforacure #findacure #mps1 #hurlersyndrome #withawarenesscomesacure #disabilityawareness #disability #prayer #prayforacure #disabilitysupport #disabilitycommunity #disorder #disability #disordersupport #disordercommunity #rarediseasedisorder #geneticdisorder #genetics #research #disabilitylife #weneedacure #livingwithdisability #mps #hurler

4/4/2024, 6:01:25 PM

Started a new project today with the organisation I'm working with in Sweden for young people 🙌🏼 First of many podcast episodes were made and I'm so excited to see it all come together 🤗 @ytanforunga 🩵 #huntingtondisease #huntington #genepositive #huntingtonsdiseaseawareness #huntingtonsdiseasesucks #talkaboutit #speakout #mystory #brain #genes #weneedacure #sharingiscaring #huntingtonssjukdom #raredisease #riksförbundethuntingtonssjukdom #RHS #ytanforunga #project #nka #alzheimersfonden

1/19/2024, 5:22:59 PM